As most readers know, Compassion & Choices was created out of the ashes of the Hemlock Society USA about 15 years ago, when it was renamed End-of-Life Choices. A few months later, the newly named End-of-Life Choices merged with Compassion in Dying to become Compassion & Choices (C&C). Shortly after that, the Final Exit Network (FEN) was formed to continue Hemlock’s work to provide volunteer guides to help dying people who request training and education about ways to hasten their deaths and end their suffering.
FEN explains what distinguishes it in the history section of its website:
- Final Exit Network is the only organization in the United States that will help individuals who are not “terminally ill”–6 months or less to live–to hasten their deaths. No other organization in the US makes this commitment. Other organizations claim to “serve” non-terminal individuals, but they will not counsel or provide guidance and support unless the patient is terminal.
- Final Exit Network will serve many whom other organizations may turn away. The Network will serve members suffering from … cancer… neurological diseases such as ALS (Lou Gehrig’s disease), Alzheimer’s, Parkinson’s, and Huntington’s, … motor neuron diseases such as multiple sclerosis and muscular dystrophy, respiratory illnesses such as emphysema, degenerative afflictions such as congestive heart failure, stroke, AIDS … and many, many others. In most of these cases, the Network is the only organization that will truly serve these individuals.
- The Network is one of the few organizations that support research into other peaceful means for self-deliverance.
C&C focuses mainly on supporting the passage of right-to-die laws throughout the country, work that FEN believes is an important mission for that organization. Along with that work C&C promotes the use of advance directives, explaining its focus this way–
Compassion & Choices improves care, expands options and empowers everyone to chart their end-of-life journey. We envision a society that affirms life and accepts the inevitability of death, embraces expanded options for compassionate dying, and empowers everyone to choose end-of-life care that reflects their values, priorities, and beliefs.
I have two primary policy differences with C&C:
1. It exclusively promotes the Oregon model of the right to die, which is far too narrow in its focus on medical aid in dying (MAID) only for those who have a 6-month prognosis;
2. It does not support a self-controlled death for all who are suffering from disease and have a quality of life that is not acceptable to them.
Nevertheless, I am pleased that C&C is trying to do more for those with a dementia diagnosis. However, a review of C&C’s new online “Dementia Values & Priorities Tool” demonstrates that it does not support people with dementia who do not want to live through that disease to its “natural” ending unless they are willing to voluntarily stop eating and drinking (VSED), which may not be an option if they have passed the point of having mental capacity. I discuss this further in Part 2.
C&C’s “Dementia Values & Priorities Tool” identifies a list of dementia symptoms to which a person may provide a decision about what level of care is desired:
1. I have forgotten everything about my past, but still recognize those closest to me
2. I am able to live according to my spiritual beliefs (food preferences, meditating or praying, attending services, etc.)
3. I no longer recognize my loved ones, but I still smile and seem happy in my own world
4. I no longer recognize my loved ones, and more often than not I seem unhappy, sad or anxious5. I am suffering mentally from anxiety, and you are not able to control it with medication
6. I am angry or violent, but with medication I am normally OK
7. I am angry or violent and it is not controlled with medication
8. I can no longer communicate with my loved ones through words
9. I can no longer feed myself
10. I can no longer bathe myself
11. I can no longer toilet myself
12. I can no longer dress myself
13. The only option to care for me is in a nursing home
14. I no longer seem interested in food, but I will swallow if a spoon is held to my lips
15. I am unable to leave my bed.
The levels of care the reader may select from include the following options for each symptom:
• I want to live as long as possible.
• I want no lifesaving treatments.
• Keep me comfortable, and stop or avoid any treatments that are preventing me from dying from other diseases (e.g., antibiotics, heart medication).
• Keep me comfortable while stopping all treatments and withholding food and water so that I can die peacefully.
• This does not apply to me.
At no place in the questionnaire is the person asked whether they want a hastened death or self-controlled death at a time and place of the person’s choosing during the progression of dementia. Since this option is the focus of the Final Exit Network and is a part of the history that C&C claims on its website, tracing its origin back to 1980 when the Hemlock Society was formed, it seems that C&C has chosen to reject its history. C&C professes to be the successor to Hemlock, but ignores one of the two most important functions that Hemlock worked for throughout much of its existence–providing guidance to those who wished to hasten their deaths from a variety of causes, including dementia.
C&C has much valuable information on its website about dementia and advance planning and the end-of-life options it promotes, but its unwillingness to acknowledge that all Americans have the right to end their own lives before dementia incapacitates them mentally and physically is an omission of enormous consequence. C&C does a disservice to all people with a dementia diagnosis by hiding from them the option that the Final Exit Network makes available.
Part 2 will conclude this analysis of C&C’s dementia advance directive initiative.
Thank you Lamar for a great article ! As one who was involved in fighting, first the name change from Hemlock, and secondly the swallowing of Hemlock by Compassion in Dying this article resonates with me.. As Derek H. said at the time “the mouse swallowed the cat.” I engaged in series of arguments with Paul Speir, President of the Hemlock Society at the time, via e-mail which left me tired, angry and disappointed. When I served on the Final Exit Network Board of Directors I must admit I carried my anger with me and have never joined C&C…. guess I carry a grudge. :>))
At any rate I`m happy C&C is chasing changes in state legislatures , as is Center for Death with Dignity who I do contribute to, but feel the real work in the RTD movement is carried on by Final Exit Network and regret that health reasons made me leave their Board early but I remain a member.
FEN so closely follows the rules that are worked out in my home country (The Netherlands) that I start to feel at home and some anxiety is falling away. Now at 81 I can see that FEN may develop further towards a secure end of life as we want it. Thank you.
My best friend asked if I would help her die, I said that I would but would probably fail. (I am a quad with MS) and referred her to our local head of C&C.
She was so pleased she told me, “To me you are the epitome of life. If I were one of ‘those’, I would want to marry you.” E pit of life when it is the pits, marry when you want to die?
She ended up needing to thirst and starve herself to death. The Oregonian headlines said, “Death On Her Terms”. But it wasn’t. After she died I had a dream of her floating by mourners in her casket, and when she got to me she sat straight up, looked me in the eyes and said, “Don’t you let me do that again!!!”
Yet I told my brother that this option was legally possible. And visited at a Catholic hospital when they said he would die in about three days. I had brought food, not knowing he had chosen that option. I asked if he had any last wishes. He said, “Yes, I wish I had a $M.” “What for? What would you spend it on?” “I would donate it. But not to THIS hospital. They want me to suffer longer.” I was amazed how good looking he was when almost skin and bones.
I told my brother that it was okay if he haunted me if he found that there was an afterlife. I experienced nothing. But three caregivers asked if I knew who this benign presence was.
Years later, namely yesterday, my caregiver and I was discussing why I was trying to find the best way for me, and everyone else to have the right to die. In my case I wanted an extended blood donationn because I was told that loss of blood felt euphoric, but just in case it wasn’t and I changed my mind, it would be easy to put my blood back in. Otherwise my body parts could be used. Then a strong gust of wind blew outside my open bedroom window, for just a minute, before and after it was so calm there seemed no breeze at all. I joked in a low voice, “Do you think that’s a spirit?” It reminds me of when….
I told him of when a cold wind in a closed room passed between the chairs of me and the person sitting in the chair bedsude me. She said, “Did you feel that chill passing between us? That’s a spirit. ” I thoght – sure some people can believe anything – and continued to look for an open window that must be the cause. It was Sunday evening and we were seated around the room looking at a candle and the group’s leader who was having each of us tell about what we just saw or noticed on the imaginary trip we just went on, then interpreted it for us as if it were a dream.. Then it was the turn of the lovliest new attendee across the room to speak. She said, “As you can see, I am shivering. That is because my master is here.” And explained that he was a discarnate from India who taught her so much that her husband was jealous. That big sudden gust of wind on a still day almost seemed like something overheard and was trying to communicate.
People who die from VSED do not starve. They die from dehydration.